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If you missed the recent webinar on Disability & Inclusion Strategies During #COVID19 for parents &/or children with disabilities, the full video & complete transcript is here:
http://www.thinkingautismguide.com/2020/04/disability-and-inclusion-strategies.html
If you’d prefer to read the highlights here, this is the thread for you. 1/
http://www.thinkingautismguide.com/2020/04/disability-and-inclusion-strategies.html
If you’d prefer to read the highlights here, this is the thread for you. 1/
First sincere thanks to @magicalbridge’s Jill Asher for creating the Disability & Inclusion Strategies webinar, & to panelists @AutisticEnough, @ForwardRolling, & Anne Cohen. We addressed some issues disabled & #autistic people & their families are struggling with right now. 2/
We wanted to acknowledge that we are all stressed right now—and that's okay. Although our participants & their children represent a range of disability experiences, we are also aware that our panel did not represent disabled people of all racial and economic backgrounds… 3/
We hope to feature panelists with a wider range of disability experiences in future webinars. We recommend other disability organizations like the @disabilityjust1 and @DisVisibility for perspectives we did not represent here. #COVID19 4/
@forwardrolling: Our goals today are to 1st, help validate & recognize that we are all having challenges in our communities and individually in our homes. Also as parents, as educators and as individual people who might have someone disabled in their home. 5/
Our panelists are disability advocates and parents of children with disabilities. So we have a kind of unique experience in our ideas and concepts. We want to share some things that have worked for us, and get some resources and knowledge out there for you. 6/
We hope our ideas and perspectives help empower you, and gives ideas of what you can do at home now and the future. Most of all, we want to end today with a sense that we're part of a larger magical community. 7/
In general, how can we in the disability & parenting communities help each other? There are social media options, but unfortunately, it's becoming increasingly clear from reports in the news that a lot of people don't have access to these options, and that's a privilege issue. 8/
A lot of people, especially older people, might not be familiar with social media or options like Zoom and Facebook Live, so if you’re good at that tech now is good time help less-tech-savvy or included folk make those work, if that's not something that's happening right now. 9/
Something vitally important during this pandemic, when people are scared & the info landscape is changing so quickly: you have to vet any infor you share/read. If info is not coming from a reliable source—a website you've never heard of, or more ads than content—be skeptical. 10/
If people share bad info with you, push back (maybe gently) if you can. We don't need more fear & misinformation during this pandemic; we need good info that's going to help us, & help us get through this together while maintaining our health & safety and mental well being. 11/
Anne Cohen says: One of the things that is so amazing about the disability community is that, for many of us, this isn't new. Being at home, being socially isolated, we have experience with this. And in some ways, that makes us experts. 12/
What are some good family and disability websites & resources? One is @DREDF, who, along with other coalition members, are advocating around healthcare access for people with disabilities because of concerns about [medical] rationing during the pandemic. 13/
There is also a national #COVID19 help line developed by the Partners for Inclusive Strategies, which has organized around disability issues during natural disasters for years, & are taking a lead in this. Contact them at 800-626-4949 or [email protected]. 14/
Thinking Person's Guide to Autism also has a #COVID19 resource page to help autistic and disabled people and their families find resources of all types during the pandemic:
http://www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html 15/
http://www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html 15/
@shannonrosa: One thing I've found helpful, from my perspective as a parent of an #autistic young adult with intellectual disability, is social stories & family stories, explaining pandemic disability issues in non-threatening & clear ways, e.g., http://tinyurl.com/GigisPlayhouseCOVID19story. 16/
Social stories can explain #COVID19 for students & adults with developmental disabilities who currently need more reassurance, more explanations, & want to hear them again & again, to help them understand why they currently can't go back to school, why they have to stay home. 17/
Pandemic social stories can help students who miss their school ( http://tinyurl.com/COVID19SocialStoryFamilyHome), or people currently unable to leave group homes ( http://tinyurl.com/COVID19SocialStoryGroupHome), as that is a reality in our community: disabled people are sheltering-in-place in group homes. 18/
Another issue we are seeing during the pandemic—unfortunately something we see in times of crises—is an uptick in interpersonal conflict and even violence while people are sequestered at home Disabled people are more vulnerable here, too. 19/
Many orgs that assist people with domestic violence, battered women, or other issues—emotional, sexual, verbal, physical—all have seen an uptick. Just recently a New York Times article ( http://www.nytimes.com/2020/04/06/world/coronavirus-domestic-violence.html) noted an increase of up to 18%, in some areas. 20/
Yes, we are supposed to be sheltering in place during #COVID19. However, abuse is an exception: if your place is unsafe, there are orgs that will help you try to find a safe shelter location. One is the Domestic Violence Hotline: 1-800-799-7233, http://www.thehotline.org . 21/
If you know someone you think is in danger of abuse or having a rough time with conflict in their home, please reach to them and check on them, even if it's just to listen to them. Makes sure they know about options, if you can do so without alerting/provoking their abuser. 22/
CN: abuse/death
Disabled children are also at higher risk of abuse and even filicide during the pandemic and shelter-in-place orders. @autselfadvocacy has a rundown on strategies for preventing abuse/filicide, as part of their anti-filicide toolkit:
https://autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-How-Can-We-Prevent-This.pdf 23/
Disabled children are also at higher risk of abuse and even filicide during the pandemic and shelter-in-place orders. @autselfadvocacy has a rundown on strategies for preventing abuse/filicide, as part of their anti-filicide toolkit:
https://autisticadvocacy.org/wp-content/uploads/2015/01/ASAN-Anti-Filicide-Toolkit-How-Can-We-Prevent-This.pdf 23/
Co-parenting is an especially difficult complication during these times. Anne Cohen noted that disabled women like her experience higher rates of domestic violence, so it can be very stressful when co-parenting when divorced, or for people living together and co-parenting, 24/
Anne: While co-parenting, expressing some of your needs or explaining stressful situations to your child can be incredibly difficult, so please seek help.
One of the best groups in the Bay Area is SVWomen, an ongoing support group with resources: http://www.womensv.org . 25/
One of the best groups in the Bay Area is SVWomen, an ongoing support group with resources: http://www.womensv.org . 25/
Be gentle with yourself. If you're afraid or scared and can't fully express your concerns with your partner regarding co-parenting, it's understandable.Many people who previously felt they were going through a good co-parenting relationship, there may currently be a strain. 26/
If you are experiencing a co-parenting crisis during the #COVID19 pandemic, you do have rights. Document your concerns, so if you need legal help afterwards, or during this crisis, you have documented what's happening. 27/
Shannon: Please consider the importance of maintaining calm and competent attitudes, and structured environments with your autistic and disabled children. It's really important to model good responses under these stressful pandemic circumstances. 28/
So while it’s understandable to be stressed right now, remember that many of our kids, especially our #autistic kids, are emotional resonators. They are going to take any emotions you are feeling and amplify them—and possibly throw them back at you. Which is not their fault. 29/
So even if it's difficult, it's important to try and be as calm as we can, as structured as we can, and maybe take more time away from each other if possible, if you can. That is OK! Cope however you can.
#autism #autistic #parenting #neurodiversity #pandemic
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#autism #autistic #parenting #neurodiversity #pandemic
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What are strategies for addressing everyone's needs in close and stressful quarters and also while supporting disabled family members? One thing that happens in any family, but is especially important to notice in ours, is "competing access needs”: http://www.thinkingautismguide.com/2018/10/acknowledging-and-accepting-competing.html 31/
Competing access needs are when one person's accommodations needs conflict with someone else's accommodations needs. So for example, in my own family (Shannon) we have noisy people, and we have people who have hypersensitive hearing and are triggered by noises. 32/
We have to address both disability issues. You can't just tell one child to shut up, and the other to not be so sensitive. That's completely disregarding their disability accommodations needs. We have to do what we can to get everyone's needs met as much as possible. 33/
@AutisticEnough: I and my son are both #autistic. I am sensory avoidant and he's sensory seeking, so that is an example of competing access needs. However, I am an adult, so quite frankly I'm more capable of finding coping methods, and his needs kind of have to trump Mommy’s. 34/
Carol: Don’t make assumptions about the causes of anxiety. Yes. it's true that most of us autistics have life-long anxiety, depression, & co-existing conditions. It's the nature of living in a world that's not built for you. It's a very big deal in the #autism community. 35/
You need to remember that your autistic child may feel anxious but may have trouble expressing why they're feeling anxious, whether verbal, whatever level of AAC they can use—all autistics have some level of communication difficulty. 36/
So if your child is anxious, you should not necessarily jump to any conclusions about the exact nature of the anxiety. What we hear from the experts is that transitions are difficult for autistics, & that changes in routine & difficult for autistics. That is generally true. 37/
Carol recently wrote about pandemic-specific stressors for #autistic people: http://www.thinkingautismguide.com/2020/03/your-lax-social-distancing-is-stressing.html, and the big disruption in all of our routines. So all the rules have changed, yet NT people aren’t following those rules like they are supposed to—which is anxiety-provoking. 38/
Deborah on self-care as a disabled parent: It’s challenging, cognitively & physically. Knowing how to manage pain is the main thing; there are secondary problems with eating, vomiting, etc. When you're in pain you are less patient and agitate more easily. 39/
Deborah: It becomes a challenge as both my children that I care for and have their own challenges, many times have to become my caregivers. Learning to find balance is hard. I try to remember that a car without any gas isn't going anywhere. I have to re-fuel myself. 40/
Deborah: I try to do things so when I'm at my highest levels I'm not overburdening my children. They have become accustomed to it, to the point that when I am in extreme pain and not acting the usual way, they remind me to meditate or relax, and so forth. 41/
Deborah on changing expectations for our kids, socially & at schools; shaming from other parents & how we're dealing with that: We need to not be made to feel we're making the wrong choice because we can't do it all; try to understand someone's battle before making judgments. 42/
